He's around, I swear. I guess he's just not in a blogging mood.
The problem is that now I'm WAY behind on telling you how he's doing. There have been a few appointments. Some for special things like yesterday's brain scan of some sort.
Well, he's still been feeling horribly, but now, add in that he's been feeling nauseated. Still the same ole same ole where he says he feels excellent in the morning until he starts taking his medications in the morning around 8:30am or so.
When he went in for his visit with the oncologist, he suggested (due to the nausea and probably the fact that Richard has the light hand rash from the GVHD) that Richard go back on a low dose of the Prednisone.
Richard does not want to be on Prednisone, of course. It makes his legs ache and weak, and being on Prednisone means that he'd have to start taking Insulin again. It's just bad all around. Plus, I'm thinking that once he's off a drug, Richard would like to think that's progress, and that going back on it means a step-back.
I think Richard regretted mentioning the nausea (although not actually vomiting) to the oncologist due to the mention of Prednisone. Richard was thinking the nausea was more due to what's been 'going around' rather than related to the stem-cell transplant, so he was going to wait a couple more days until he followed the oncologist's orders. He wanted to see if the nausea went away.
Anyhow, in the mean time, at another appointment, I think, Richard's creatinin levels were up too high again, so they let him take some bags of fluids home to self-administer via his Hickman Line, rather than him needing to drive into VGH for the next 3 or so days in a row.
Then, he had another appointment yesterday with the other oncologist (I think that's what she is) "Dr. Gentle" if you remember from past stories. Anyhow, Richard was discussing the Prednisone issue with her and wondering what it would be for. I mean he knows what Prednisone is and what it's for, but he meant....
*Am I supposed to take it just to relieve myself of the symptoms of GVHD and their uncomfortableness, or are they preventing something from getting worse? I'd rather have nausea and feel the way I'm feeling than deal with the effects of Prednisone any day.
If I remember our conversation correctly, she mentioned something about his liver and worrying about that.
Oh yeah, I know what came before this. So.. the day before, Richard started taking this 'contrast' stuff for the brain scan. I don't know what it is, like radioactive dye or something probably to make stuff show up on the scan...
*****not actual quotes, just my interpretation of their conversation****
Anyhow, Dr. Gentle called the day before and said, "Hmmm, you know, I'm looking over what's been going on with you, and I'm worried your liver can't handle the contrast stuff, so don't take it. We'll do the scan without it."
Richard: "You mean the stuff I just drank 5 minutes ago?"
Dr. Gentle: "Yes. That. Don't take anymore of that."
I was just saying to Erica last night, how impressed I am (not being sarcastic) at how well they keep track of Richard and his medications. Doctors (usually Dr. Gentle) will call mid-week, out of the blue, to say, "I've been looking over your chart. I'd like you to adjust your dosage of _______".
I don't know. That impresses me. Especially since he sees so many nurses and doctors/oncologists each time.
Questions that came up while I was talking to Erica last night that I thought would be good to mention here because if Erica's wondering, then you must be wondering too.
*****again, these are not even close to exact quotes, just 'the jyst' ****
So, what the heck is with the 100 days (100 days of hell - 100 days since the transplant)? Isn't he supposed to be getting better now?
The 100 days is just kind of the 'scariest time' let's say. When the GVHD 'flares up' so to speak, it's considered 'acute' during this phase of the recovery, and perhaps more serious.
After the 100 days, when GVHD 'flares up', it's considered 'chronic'. I guess in the way that he can get it forever, and recurring. He could be on medication to keep the GVHD from killing him for the rest of his life I'd imagine.
Should he be feeling better and getting better by now? He sounds like he's still just as sick as before, maybe worse?
Well, with the exception of his transfusion he had the other week (which was odd, but not worrisome), Richard's numbers are getting better! So in a way, he is on his way to getting better.
In fact, last week, they wanted to take out his Hickman Line! They almost did! Luckily, due to the fact that that he's still needing fluids for his creatinin levels, they decided not to. Phew. I don't know about Richard, but I'm not ready for that Hickman Line to be taken out quite yet.
The other questions were 'deep' ones about feelings.
To much to have to type. But in a nutshell, Richard cannot remember what it feels like to feel normal and good. I cannot wait until 'life gets back to normal', but then again, it might not ever go back to normal so I don't think about that too often.
Richard was feeling well enough last night, to make bacon wrapped steak bites. Yum. Haven't had those in ages. However, standing that long to cook them, I think took a lot out of him, and he was going to be alone with the boys last night while I went to a baby-shower, meaning, he was going to be doing bedtime by himself.
Sounds easy, if you're healthy. But it can be exhausting when you're sick. Even with well-behaved boys that don't argue about bedtime.